Friday, December 19, 2008

Got a call from HunkyPants this morning. All of Simon's tests came back normal with his BNP going lower.

Yay!!

We went from 1457 from two weeks ago down to 1149 this past week. I'm loving it. Shimmy's BNP can go as slowly as it wants so long as it keeps going down. Very very very pleased about that. We are also moving forward with a Gtube placement sometime early in the new year. I need to double check but I'm pretty sure that it's an in-patient procedure and means at least an overnight in the hospital, most likely the ICU annex- won't they all be thrilled.

I won't pretend that I'm not having a reaction about that, going back there. At least it's for something that we are choosing and will ultimately and hopefully be a step forward in healing. It's still a surgery though and those always come with risks. The cardiologist and the GI specialist have both said that he's in good condition for the procedure AND that doesn't mean that there aren't any risks. He's going to be "under" for almost an hour and that's hard on his little body and systems.

The other bit of good news is that it also looks like we could do it in one surgery instead of two short ones spread out over 3 months and go right to the button. The first picture is the button itself (the little balloon at the bottom is what lies underneath the skin and keeps it in place). The second picture is what it looks like once it's placed. Not too bad right? Supposedly after it's had some time to heal and settle it shouldn't preclude Shimmy from doing anything including bath and tummy time. Sweet.

I am still a little freaked out about him 'going under'.

In other news...

We are figuring this home thing out slowly. I'm getting some good cries in. Shimmy is getting some social time in. We are getting out. We are staying warm. It's all coming together.

And it's frikkin' hard. I am Simon's ICU, his monitor, his nurse. It feels like a lot when I think about it all, or sometimes just around 4pm when I can look back at most of the day and see everything that I've done to keep him alive, gaining weight, comfortable, not to mention learning and growing like a regular baby should be. But the moment to moment isn't really hard at all (tiring, frustrating maybe, but I wouldn't say hard). So I clean up vomit a bit more than most moms, big deal. Watching Simon learn how to self soothe himself to sleep and really respond to a regular schedule is a delightful thing. And, I cannot wait to get his sweet face sans noodle back.

...

Just got off the phone with Children's Hospital and the initial word is that there is no surgical opening until Feb 2nd. I'm hoping that's not really the case but simply what the receptionist was saying given that she hadn't even gotten the referral yet. 6 more frikkin' weeks?!! Blech.

We had a lovely date with Baby Julian and his Big Daddy Tanner. And last night Shimmy got more facial hair time with two other big Daddies, Robert and Reid. That boy does love him some facial hair.

Here are Julian and Simon playing at holding handsNear.......FarHere is Simon realizing that Julian is still fresh faced where as Poppa Tanner has a Goatee

And then there's Robert's full on Beard

Which is even longer than Reid's. Simon, "Gee you remind me a little of my PopPop Bernie." Jaime's home now so it's family time. It's family time for 2.5 weeks!! Yeehaw.

Thursday, December 18, 2008

It's been a little hectic. I'm sorry we haven't done an update since the 11th. I was waiting for Shimmy's BNP from the last visit but it's still pending. Everything else looks good though.

We've had some sweet visits with other babies and while it's a harsh reminder that Simon has some serious catching up to do (why? well cuz he has a heart condition and spent 4 months in the icu) it's also been really great to have some baby social time. That's what Simon is, a baby, not just a cardiac patient with lots of meds and Dr visits and limitations. He's a delicious baby who can learn and play and grow along side his fellow babies. Next time we'll get some photos of him with his baby friends.

Here are some photos of the last couple of days to tide you over.

Love to all

Laura

Snuggle time with Auntie Manders

This Hat is so cool, look what happens when I turn it!

Ah, yes the festival of lights is approachingLook Mom, I can pull your glasses off

About Us

Team Shimmy was started the day our baby, Simon (aka Shimmy), became suddenly ill (8/1/08) with a rare heart condition called Cardiomyopathy. That day, friends and family rallied around us to form Team Shimmy. This team, which has grown to include new friends and strangers from all corners of the world, has sustained us with love, food, kind words and listening ears.
We spent 4 tumultuous months in the ICU at Children's Hospital Oakland. Simon has been steadily improving since that day. He was fed through a tube in his belly (a Mic-key) until December 2013, was diagnosed on the autism spectrum, receives various types of therapies and is still on meds. Oh, and he's the happiest, most engaging kid we've ever seen. Jaime (Mama) works in public health and Laura (Mommy), a former school social worker, stays home to take care of Simon (and to take him to his MANY appointments). To see a 10-min documentary about our family, go to www.youtube.com/watch?v=uGh8dFp2oqk.
This blog is a chronicle of our experience thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.
Contact us at lafitch@gmail.com or jaimejenett@gmail.com